Of the 15 people interviewed, 8 were ADAP enrollment workers and 7 were PrEP navigators. In one case, an ADAP enrollment worker informally served as a PrEP navigator as well. See Table 1 for a description of the key informants and their respective settings.
Informants were enthusiastic about the idea of a PrEP benefits assistance program. Concerns about the program centered around the capacity of staff members to take on new work, and questions around who would be eligible for the program and what exact costs would be covered. Many participants, however, especially PrEP navigators, were not concerned about additional work load, and often envisioned the new program as a natural extension of their existing duties. We describe these themes and more in the sections below.
Experiences with the AIDS Drug Assistance Program (ADAP)
Based on preliminary discussions among leadership and staff at that Office of AIDS, the forthcoming PrEP benefits program will mirror many aspects of the AIDS Drug Assistance Program including, specific eligibility criteria and documentation requirements as well as an electronic platform (an online enrollment portal) to facilitate enrollment. The ADAP portal has been easier to use and navigate since the California Department of Public Health (CDPH) took over its administration from an external contractor in early 2017. Previously, there were serious and widespread problems with the management of the program resulting in the termination of the contract with the external contractor. Frontline users appreciated the increased communication and collaboration with the Office of AIDS (OA) regarding the design of the new portal. A new enrollment currently takes on average 20 minutes if the client has the necessary paperwork and up to an hour or more if the client does not have the necessary documents. Informants noted that presenting income verification and residency paperwork were the most common barriers to rapid enrollment.
Helpful portal features
- Universal search tool to look up client by first name, last name, date of birth, or social security number
- Dashboard feature indicating time left to complete application or renewal
- Scanning feature to upload supporting documentation
Helpful process features
- 30-day grace period to submit paperwork
- Assigned ADAP advisor at the state
- Monthly conference call between the Office of AIDS (OA) and frontline users
Despite the improved functioning of the portal since CDPH intervention, there were still significant challenges with ADAP. Two types of issues emerged: proximal and longer-term.
Proximal issues
- ADAP enrollment workers do not always get confirmation that CDPH received an application or document. The portal does not allow for either the tracking of out-of-pocket cost claims or supporting documents related to ADAP enrollment eligibility.
- Maintaining paper copies, while necessary for audit purposes, can be a nuisance.
- ADAP enrollment workers must file an explanation if a client needs a 30-day grace period. Previously, there was an automatic grace period.
- Re-certification letters sent by mail to clients are sometimes mistakenly discarded, not received or lost.
- Some clients were confused about documents required for annual re-enrollment versus bi- annual re-certification due to frequent changes due to frequent changes in program guidance
Longer-term issues
- Social workers performing ADAP enrollment work distracts from performing other services on behalf of clients.
- Clients with chaotic lives have trouble providing paperwork and require a lot of tracking to fully complete enrollment.
Response to PrEP Benefits Program
Both ADAP enrollment workers and PrEP navigators perceived a need for and were enthusiastic about a PrEP benefits program. PrEP navigators were more likely than ADAP enrollment workers to have heard about the possibility of a state-level PrEP benefits program.
Perceived advantages
Informants believed that a PrEP benefits program would decrease disparities between those with and without PrEP access. In particular, uninsured clients (including those without established US residency) or those with a high deductible insurance plans are two groups that stand to benefit in particular. The Gilead patient assistance program, with its annual cap on spending, is limited and potentially leaves people without continuous access to medications. Informants felt that this new program could help people sustain PrEP use and expand access to people unable to initiate PrEP due to financial burden.
PrEP navigators explained that, in some cases, the new program may make benefits counseling easier by expanding access to PrEP. Several ADAP enrollment workers perceived PrEP users as more educated and younger than the average ADAP client living with HIV, thus assumed that enrollment for PrEP benefits assistance would be quicker than those for ADAP.
Perceived concerns
Informants raised concerns that it may be challenging to implement a PrEP benefits program because HIV care and prevention often occur in different settings. ADAP enrollment workers may have difficulty incorporating prevention into their jobs, since they are often situated in HIV clinics. Additionally, current and potential PrEP users may not receive services in places where ADAP enrollment workers are placed.
There was a perception that PrEP users tend to be young and therefore may move or change jobs
frequently. This patient population may experience
more frequent changes in health insurance status than older patients. Thus, informants expressed that PrEP clients may induce additional documentation updates than ADAP clients, depending upon the paperwork requirements for the PrEP benefits program.
Who handles PrEP benefits enrollment?
Attitudes about who was best suited to enroll clients into a state-run PrEP benefits program varied according to the informant’s role and workplace setting. PrEP navigators generally felt that they would be well suited for this work. Yet some expressed concerns that it would take away time that they could be spending on health education and counseling.
The capacity to increase caseloads of existing staff was often seen as a challenge, particularly at sites anticipating large numbers of PrEP seekers, in additional to large numbers of HIV-positive clients needing ADAP. Two of the interviewed ADAP enrollment workers were based in settings with a high volume of PrEP users. They recommended hiring a new person specifically for PrEP benefits assistance. They felt that they had already reached their maximum caseloads and could not reasonably foresee serving PrEP patients in addition to serving patients accessing ADAP.
Informants also expressed different interpretations of the role of benefits and enrollment work in building client relationships, which shaped their attitudes about who should take on enrollment work. For instance, some saw enrollment work as a discrete task that could be performed by a PrEP navigator, an ADAP enrollment worker or a benefits counselor. Whereas some PrEP navigators perceived benefits counseling as an integral part of a longer-term relationship. In general, most participants expressed a desire to reduce the number of hand-offs if at all possible to build rapport with potential PrEP users.
ADAP enrollment workers in settings without any other benefits counselors or PrEP navigators were generally willing to take on PrEP benefits enrollment in the future, if such clients were to be seen at their agencies, provided those conducting new enrollments would receive sufficient training.
Informants with either a background in benefits counseling or health navigation or among those with extensive experience working with systems such as Medi-Cal, Medicare, and Covered California were well equipped to handle benefits navigation for the most complicated PrEP seekers i.e., those with a high- deductible. This points to the need for comprehensive training on multiple health benefits systems. One benefits counselor made this point while expressing concerns that ADAP enrollment workers may not receive enough comprehensive training. From her perspective, handling ADAP often required a deeper knowledge of other systems, such as Medi-Cal, Medicare, and Covered California. Meanwhile, PrEP navigators report frequent prevention counseling and risk assessment with PrEP users that often involves discussions about sexual practices and were concerned about the ability of those without expertise in sexual health counseling to serve PrEP clients. Some ADAP enrollment workers expressed the concern that they lack sufficient training to competently navigate these sensitive topics.
